What's next for our blog?

Yet again time has flown, and its been nearly two weeks since I last posted!

To continue the blog?

I was thinking the other day about whether our time on this blog has come to an end. It's primary functions were to raise awareness of a relatively unheard of syndrome, and share the story of a tough pregnancy that was full of unknowns. Now that G is here with us safe and sound, I'm unsure about where to take our story. Whilst our relationship with Turner Syndrome is by no means over-it will be a life long one-the hardest part is now over.
Sure we''ll have plenty of baby stories to share, and the odd appointment with the paediatrician, but so long as G continues to be healthy, we will have very little to share with regards to her syndrome.

Still no heart appointment....

We are still awaiting the blood test results to double check Gs platelet and haemoglobin levels, and more importantly we are still waiting on our appointment with Dr Archer, the heart specialist from Oxford. Whilst We are happy that her heart scans were clear during pregnancy, we (or I-the worrier) will be much more at ease once she has had her infant heart scan, as up until now all of the scans were during pregnancy. Let's hope that magic appointment letter arrives soon.

Baby joys

I'm finally getting used to being a mummy :) I'm worrying less about the weird farmyard noises that she makes, panicking less about what to do when she cries, and just generally enjoying being in her lovely little presence! Tim has taken to fatherhood like a duck to water, you'd never have believed that he hadn't held a baby before G. He's still a little averse to the 4am night feeds though, and can sleep through her noisy nays, baaas, squarks and cries (is that just a man thing?!).
Family have fallen in love with G,and she is permanently fussed over by grandparents, uncles, aunts and surrogate aunts.

Reflecting

I had an antenatal reunion this week, and we had to tell our stories. As I had enough to talk about with the emergency c section and Gs time in special care, I didn't get round to mentioning the hardest time of all-the pregnancy, and coming to terms with her Turner Syndrome.
It's funny to think that we spent a whole 6 months not knowing what was in store for us, and whether the pregnancy would even come to term. That 6 months seems like an age ago. I can't remember the amount of times that I cried, and worried over whether I'd still be pregnant by the end of the day. I say funny, only in that all I ever think about now is whether I'm going to be vomited on, how long G will sleep for, and whether she needs her nappy changing! Joking aside, those hard times have long since been forgotten.
So different now. So happy. So lucky :)

Here is an Easter picture of G for you all...

Home and settled!

My last post was written two weeks ago (where has the time gone?!), and I finished off saying that I had hoped gracie would be home in time for Mother's Day....

Home in time for Mother's Day?

Being discharged from hospital on the Wednesday, and taking that first journey home without G, seemed very bizarre. I had imagined her first trip in the car seat, and Tim driving at 50mph instead of his usual fast pace, but that day wasn't going to be just yet.

That night, I slept well, but as soon as we woke on the Thursday morning, I was anxious to get straight back to the hospital.

Upon returning, we found that she had fed well throughout the night, her bloods were improving, and now she was allowed to come off the drip. It was so nice to see her not hooked up to machines, though she still had the nasty canulas in both hands. The doctors said that she was doing well, but needed a brain scan, which alarmed me. They also said that if all was well, G could potentially go home the next day (Friday), and that we should stay overnight with her in special care in one of the private rooms. So that evening, I returned to hospital with my overnight bag to spend my first night in almost a week, with her. We agreed that Tim would stay at home with the dog. It wasn't the most successful night, and G was awake for nearly 5 hours, leaving me distressed and helpless. At 4am one of the nurses offered to look after G for 2 hours to give me some sleep. Those 2 hours gave me just enough energy to see the next day through.

Tim returned to the hospital in time for the doctors rounds the next morning, and to our amazement, they felt the brain scan was no longer necessary, and they were happy to discharge her after lunch. Putting her in the car seat, and securing her in to the car, felt truly surreal. We had spent so much time at the hospital, both during and after the pregnancy, but finally we were on our way home, for good.

She would be home in time for Mother's Day....

Features of Turner Syndrome at birth

We have had many conversations with friends and family about whether G is displaying any of the potenial symptoms of Turner Syndrome.

Just to remind you, symptoms that can affect appearance and can be seen from birth, include:

• a particularly short, wide neck (webbed neck)
• swelling of the hands and/or feet
• a broad chest and widely spaced nipples
• arms that turn out slightly at the elbows
• a low hairline
• small, spoon-shaped nails
• a short fourth finger or

• eyes that slant downwards
• droopy eyelids

• low-set ears
• low birth weight

At the moment, G only really displays two of these characteristics-her feet were swollen at birth, and still have some swelling, and she had a lower than average birth weight.

Gracie will develop other issues as she grows up, two of which are certain-a short stature, and ovaries that do not function. There are numerous lists of other potential problems, which can affect organs, development, learning etc, however she may not face any of these. So for now we will continue to be thankful that she is as healthy and happy as she can be.

Amazing support network

We have been truly blessed with support from family, friends (new and old), and even people that we barely know. People have cooked for us, sent us lovely messages and cards, continually been asking after Gracie's progress, and praying for her health. She is already well loved, and thoroughly spoilt!

What's next in terms of medical care?

We are waiting on an appointment for a heart scan, which should take place in the next 4 or 5 weeks, and we have just been sent an appointment to see our paediatrician in June. Those aside, we will carry on like any other family with a newborn baby, and take each day as it comes. For now though, we can enjoy the fact that we don't have an appointment every week :)

What a lovely little miracle she is. She is the 1-2% that did make it, though to us she's our little one in a million!

Baby G is here!!

As far as anxiety, unpredictability and shear fear are concerned, this last 5 days has been full to bursting with all 3.... As well as feelings of overwhelming love :)
What has happened to us since Saturday, would need at least 2 or 3 posts, so I'll give you it on a nutshell for now (though it may turn into an essay!).

Early labour?
Friday evening and Saturday day I felt 'weird', I'd guessed I was having mild contractions, but was concerned at the lack of baby chappos movements.
Once Tim returned from hockey, we called the labour ward, and were asked to come in for checks but told we'd probably be sent home.
Within 20 minutes of arriving, we were told baby wasn't coping with my mild contractions, she has also pooed in the womb -yummy- and I needed an emergency c section. NOW.
Suddenly, at least 8 people descended on my room helping to prepare me. Tim was whisked off, and in ten minutes I was on the operating table, with Tim by my side.

G was born several minutes later at 5:18pm, weighing 5lb 13. She needed extra help to get going but apparently she was out in the nick of time.

A problem?
The next 24-36 hours she was very unsettled and wouldn't feed much. She was also bright red (though at the time we didn't think much to this).
The paediatricians visited us Monday morning, and told us she needed some tests in special care. By late afternoon we were told she needed to be admitted to special care. High haemoglobin-very thick blood, and low platelets. We were distraught, and my post labour hormones went mad.
Later we visited and she had canulas in both hands, and was hooked up to drips and monitoring machines. She looked so tiny and helpless.

Tests and transfusions
Since Monday evening G has had a partial blood exchange (swapping some blood for fluid) and a transfusion of platelets. We're now waiting to see if these procedures did the trick, or if anything else is required.

Was it the Turner syndrome?
Gs condition with her blood can happen to any child. Little is known about whether it is linked to turner syndrome. It wasn't linked to the problems in labour or birth either. Just one of those things....again!

We're praying G will make a speedy recovery, and to have her home soon-by mothers day would be my preference! I'm off home today, and whilst I'm extremely pleased at the prospect, we are both gutted that our little one can't come with us today. She is being well looked after, and is in everyone's thoughts and prayers. Little fighter is still fighting :)

I just wanted to add how amazing everyone has been over the past few days, especially my husband. He has not only had to deal with this, keep the house and dog going, but also cope with an extremely emotional wife. He's so positive, and will be the bestest daddy!